What Is HD?

Huntington’s disease (HD) is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities usually during their prime working years and has no cure.

Find Help

Locate HDSA Chapters and Affiliates, Support Groups, Social Workers, and Centers of Excellence in your area as well as additional local medical, legal, social, and therapeutic resources for people with HD and their families.

HD Research

Since 1999, the Huntington’s Disease Society of America has committed more than $20 million to fund research, with the goal of finding effective treatments to slow Huntington’s disease. Our research efforts have helped to increase the number of scientists working on HD and have shed light on many of the complex biological mechanisms involved.

Healthcare Professional resources

This section includes online courses for physicians, social workers and therapists who care for people with HD at the local level. Courses deal with cognitive, physical, therapeutic, technological and legal HD issues among other topics. This section also includes reference materials in video and PDF format for Social Workers on HD issues listed by varied categories.

GET INVOLVED

When Marjorie Guthrie founded our organization in 1967, her vow was to “do something” about this devastating disease. Today we continue her legacy by bringing together the entire community to provide help and hope to all families affected by Huntington’s disease. Listed here are some of the ways you can get involved in the fight against HD.

HUNTINGTON’S DISEASE SOCIETY OF AMERICA AWARDS BERMAN-TOPPER FAMILY HD CAREER DEVELOPMENT FELLOWSHIPS RESEARCHERS FROM CALIFORNIA AND CANADA AWARDED PRESTIGIOUS GRANT

New York, NY, May 30, 2017 — The Huntington’s Disease Society of America (HDSA) is pleased to announce that Dr. Tamara Maiuri (McMaster University) and Dr. Sarah Hernandez (University of California at Irvine) have been awarded HDSA Berman-Topper Family HD Career Development Fellowships for 2017.

These prestigious fellowships, made possible due to the generosity of the Berman and Topper families and CHDI Foundation, provide up to $80,000 of funding per year for three years to young scientists and clinicians who desire to make Huntington’s disease (HD) part of their long-term career plan.

“On behalf of the Topper and Berman families, I would like to congratulate Drs. Maiuri and Hernandez on being named 2017 recipients of this fellowship,” said Michael Berman. “Our hope is that the work of these two outstanding young scientists will lead to greater understanding of HD and accelerate the search for effective therapies for Huntington’s disease. We sincerely appreciate the support of CHDI, HDSA and its Scientific Advisory Board.”

HDSA received applications from researchers from all around the world for this competitive grant. Dr. Maiuri’s project will investigate the role of the huntingtin protein in DNA repair and search for small molecules that affect huntingtin and its oxidative stress interacting proteins. Dr. Hernandez’s research will utilize patient-derived stem cells to elucidate the dysfunction of the extracellular matrix (the infrastructure of cells) in HD neurons and test ways to positively restore HD cellular function.

“Proposed cuts to the budget of the National Institutes of Health (NIH), a major supporter of HD research, have expanded the role of non-profit disease organizations like HDSA, to ensure that the HD scientists and clinicians of the future have the resources and opportunities they need to succeed today”, said George Yohrling, PhD, Senior Director, Mission and Scientific Affairs at HDSA. Huntington’s disease is a fatal genetic disorder that causes the progressive breakdown of nerve cells in the brain. It deteriorates a person’s physical and mental abilities during their prime working years and has no cure. Each child of a parent with HD has a 50/50 chance of inheriting the faulty gene that causes HD. Today, there are over 30,000 symptomatic Americans and more than 200,000 at-risk of inheriting the disease. The symptoms of HD are described as having ALS, Parkinson’s and Alzheimer’s – simultaneously. ###

About the Huntington’s Disease Society of America The Huntington’s Disease Society of America is the premier nonprofit organization dedicated to improving the lives of everyone affected by HD. From community services and education to advocacy and research, HDSA is the world’s leader in providing help for today, hope for tomorrow for people with HD and their families.

To learn more about Huntington’s disease and the work of the Huntington’s Disease Society of America, visit www.hdsa.org or call (800) 345-HDSA.